Toby's Story

It occurs to me that with so many new readers to my blog I might need to write something about Toby's story. I did it in the very early stages, but it's on my other blog (www.krumlovgirl.blogspot.com) and I haven't really gone into detail here.

So, here it is...



The Birth


Toby was born on July 5, 2010. He was born just a few minutes short of being born on the 4th of July.

It was a very difficult pregnancy that ended 4 weeks early in a traumatic way. Luckily, we had gone away for the weekend to the next town over. Our hotel was downtown and just 3 blocks from one of the best hospitals in the country. I ended up having a complete placental abruption that ended in bloodbath and drama and had it happened two days earlier or two days later I don't think either one of us would have lived. At home, we were isolated in the country and the closest hospital to us would not have been equipped to take me. The time spent airlifting me to anywhere would have been detrimental.

We counted ourselves lucky.

I called my friends Becca and DeSha in the middle of the event to come and watch Sam for me while we were at the hospital. They left their 4th of July party and rushed over. Toby was born a little while later. The first thing I said to him was, "I promise things will get better."

We weren't allowed to have him that night because of the problems he had but that was really okay. I had lost a lot of blood and we were exhausted. Pete followed him to the NICU and videotaped him for me. I fell asleep and they woke me up the next morning and let me hold him.



At Home


Right away, Toby was the sweetest baby ever. He rarely cried and loved to cuddle. He was the exact opposite of Sam who had been demanding and was either crying or sleeping. The sleeping never lasted for long.

At home, Toby fit right in. I spent most of the day with him at home alone while Sam was at daycare. We watched our favorite TV shows together (FULL HOUSE, WHO'S THE BOSS, and THE GILMORE GIRLS) and he helped me cook supper. I was going through a soup phase.

We took the kids on little picnics, to the fair, out to eat, for drives...Toby went a lot of places with me alone. Our favorite place was a little diner in Irvine where he would sleep and I would read and talk to the teenage waitress. She said that they loved it when he came in because he was so good and quiet.

When Toby was two weeks old we took him to a writing retreat with us. He was great that weekend and barely made a peep. After we Pete and I both participated in open mike one evening the woman in charge (our friend Kate Larken from Motes Books) said, "Wow, with parents like that he's going to have all kinds of talent."



Changes


Not long after that, we saw a change in him. He got grumpy. He started crying a lot. It took them a year to diagnose Sam with severe acid reflux and I wasn't going to go through that again. Everyone had told us that  when Sam cried it was because we spoiled him. Not true. It was because he was in pain. I took Toby to the doctor and he cried the whole time. The doctor recognized the reflux and gave him Zantac.


My cousin was getting married in Nashville and we were afraid we would miss it. On the day before, though, I decided that I really wanted to go. We packed everyone up and headed to Nashville. It was so nice to see some of my family, like my Uncle Ray and Aunt Fran. Only two of my friends had met Toby at that point and we don't have family close so they hadn't met him, either.

In fact, Toby died without even meeting my dad.



The Last Weekend


Anyway, that was the last good weekend we would know for a long time. We had so much fun with the kids. We took them swimming and out to eat and to get ice cream. Toby cried a lot, though. Aunt Fran urged me to take him back to the doctor. She said something didn't seem right.

On the way back home we stopped at a sporting good's store. We played in tents and pretended we were the Three Little Pigs. We also ate at Cracker Barrel. People looked at us and smiled and commented on what a nice looking family we were.

Unfortunately, I do not remember the rest of the week. Again, we thought it was PTSD. I was taking anti-anxiety medication but it wasn't helping. Now we know why.

On Friday afternoon my friend Karen came to visit. She got to meet Toby and spend about an hour with us. He laid on my chest most of the time. We were chilling on the couch. He was such a cuddlebunny.

That night, I went to bed early. I do not remember kissing him good night. I don't remember the last time I saw him. My last memory of him was around the time that Karen left. This is one of the worst parts.



A Day of Horror


The next morning, Mom and I were taking the kids to a literary event in Frankfort. I was supposed to get up early and get them dressed. Pete stayed up with Toby. I expected to be woken up around 6:00 am.

Instead, it was about 9:00 am when I woke up. Something didn't feel right. It felt too late. I peeked into our office where we had a spare bed and Pete was asleep. I thought he must have take Toby down to Mom to let me get some extra sleep. I used the quiet time to take a shower, put on some makeup. I had felt guilty about not spending as much time with the kids as I should have.

When I was ready, I woke Sam up. I took him downstairs and turned on cartoons for him. Then, I went in MOm's room to check on Toby and to see if she was ready. It was still so quiet. Mom was asleep, though, and alone.

I knew then that something was wrong.

I ran back upstairs and this time went all the way to the spare bed. Toby was blue and stiff. He had been gone for some time. I screamed and jumped on the bed and started doing CPR. Pete woke up and started screaming as well. After a few minutes I ran off to find my phone and call 911. Mom was up by then. I screamed at her, "He's dead, he's dead!" She grabbed her phone and we both ran back upstairs. She called 911 and took over doing CPR. Pete ran outside and grabbed Sam and stood in the yard to watch for the ambulance.

They were there in a matter of minutes which is crazy considering how far out we lived.

The paramedics picked him up in their arms and flew down the stairs. I followed them. One of them shouted, "Is this the mother?" and then pushed me into the ambulance.

They were short staffed and after they got the breathing tube in him they asked me if I would hold it. I was shaking so badly that it fell out. The heart monitor showed no activity. I asked the paramedic if there was any hope and he answered, "Ma'am, there's always hope."

A truck followed us and we pulled over in the middle of the highway. It was our neighbor. He was also a paramedic. He jumped in and we took off again. We needed the help.

At the local hospital they made me wait outside the door. Mom and Pete had not made it yet. I sat there alone and stared at the door. A few minutes later, the doctor came out and told me what I already knew.

At this point, they let me go into the room. A nurse was in there but everyone else cleared out. Toby was blue and red in some places. I stood next to him and cried and the nurse cried, too.

Mom, Pete, and Sam came in later. Pete had brought Toby's blanket for him. They thought he might still have a chance. I had to be the one to tell them he was gone. The staff played with Sam a little bit while we were all in the room with him.



At the Hospital 


The county coroner was up on one of the mountains and it took him a few hours to come in. During that time, I made phone calls. I first called our friend Ashley. He came over and stayed with us. We mostly stayed in the room with Toby. We touched him and when he started bleeding out of his little nose I sat there and wiped it away.

Someone said that they saw me at the hospital and that I was "out of it." This is not true. I was very much aware. They asked me if I wanted to donate Toby's organs and I said yes. I spent an hour on the phone with Frankfort, fielding questions about his medical history. I even laughed a few times when they asked me things like, "Did he smoke?" A policeman was there (protocol) and he stood with me the whole time, handing me tissues. When I hung up he shook his head and apologized.

People at the hospital were very, VERY good to us. We were allowed to hold Toby and be with him alone. No one ever made us feel guilty or acted accusatory in any way toward us. The nurse in the room with me for a time even cried with me. I have heard horror stories from other SIDS parents so I am grateful for this.



Friends


When I got home our friends Becca and Rob were there. I had called them from the hospital and they had come to the house to wait for us. They had started to come to the hospital but wanted to stay at the house instead, to give us time with him alone.

Later, a few other friends showed up. They made me soup and helped me to bed. Mom and Ashley had taken the car seat out of the car, moved his swing out of the living room, and done a few other things so that I wouldn't be bombarded right away.

The coroner was there, too, to do an investigation. Becca said that he sat in the kitchen with Pete for an hour, convincing him it wasn't his fault. He said it was probably going to be labeled a SIDS death.

The next day, he called and left a detailed message. He said that although the autopsy wasn't complete, accidental suffocation had been ruled out.

I firmly believe that Toby would have died that night no matter what. I am glad Pete was with him. If he hadn't been laying next to Pete then he would have died, alone, in his crib. I am glad that the last thing he felt was Pete beside him.



The Funeral 


Thankfully, my mom stepped in and did all of the hard work planning the funeral. She asked our opinions about everything and did everything we wanted-she just took care of the details. I am glad because there's no way I could have done it. There were no questions regarding the funeral home and where he would be buried. Those were easy decisions.



Toby was buried next to my Nana in Menifee County. The cemetery is beautiful and it's a nice spot on the side of the ridge. He has a beautiful headstone. The service could not have been any nicer. The former superintendent of Wolfe County (and our friend) sang the songs that I requested: Silent Night, When they Ring the Golden Bells, and Green Pastures. I read a poem and talked about Toby's favorite movies, TV shows, and songs. Pete spoke about his last night with him. One of mom's students even got up and spoke about how sorry she was. In fact, several people randomly volunteered to get up and speak at the service. I was really touched.

The funeral home only charged us their overhead costs so that was helpful. They did a nice job with the service and with Toby himself. It took us almost a year to pay off the expenses but they never once demanded payment or harassed us about the money.

My Aunt Fran and Uncle Ray drove up from Texas and my cousins who had just gotten married in Nashville came as well. She had just gone through back surgery a week before (postponing her honeymoon). That they went out of their way to come was wonderful.


Friends came over and helped before and after the funeral. My friend Melissa, whom I hadn't even seen since high school, helped me pick out a burial outfit for him and helped me get Sam's bed ready for guests. Former co-workers cleaned our house and prepared food for the guests who came after the funeral. That week is a little bit of a blur to me, but I appreciated everyone who did everything. 


Aftermath


People we knew and didn't know sent us cards, money for his headstone, and other gifts. Our friend Melissa had a yardsale to raise money for our expenses.

Unfortunately, we couldn't afford to take off any time from work. Toby died on a Saturday and Pete taught his classes on Monday. Eventually, I took about a week off. It just got too hard.

The first few months were spent in shock. About the time that people started telling us that we needed to "move on" was about the time that the real grief sunk in. The 6 month mark was probably the worst. His first birthday was sad. The milestones just kept getting harder.


I developed a form of agoraphobia after his death and had trouble leaving the house. Some people were very understanding of this and came out to visit us and hang out with us. Many people dropped off and we never saw them again. There were lots of changes in the aftermath of his death dealing with them could be just as hard as our grief.

We think about him everyday and talk about him a lot. For us, he is still a part of our family and still here with us. His room decorations are used in our office. He gets a Christmas tree. We decorate his grave for the major holidays.

Toby was not here for very long, but he was still loved and he's still part of us. 

6 comments:

Anonymous said...

Thank you for sharing. I'm also a mommy whose baby died from sids. u never get over it ya just learn to live with the constant pain and wonders

Anonymous said...

Thank you for sharing your heartbreaking story of your sweet Toby.

sf5 said...

My grandson died august 2012. I have a constant question...the unanswerable WHY.

sf5 said...

My grandson passed of SIDS August 2012. I'll never understand why. I'm so sorry for your loss. God Bless You all.

momof72nheaven said...

I lost my daughter on May 30,1988 of SIDS. I was only 18 and a single mom. Rhiannon, my daughter died next to me in bed. I was supposed to wake up at 4 am to feed her. She had a low sugar level. I either slept through the alarm or it didn't go off. I am still bothered by the nightmares of her blue, me screaming, CPR, ambulances. 20 yrs later I lost my 15 yr old son in a car accident just 400 yrds from my house. I was driving. The nightmares of losing my baby intertwined with those of losing my son. Trauma is so hard to deal with.

Larry Fendley said...

I understand completely. People don't understand that have not had it happen. I am a Christian and so is my husband. We know we will see our son and daughter again. But I agree that you never get over it you just learn to live with it. We lost our daughter in 1965 and our son in 1968. We have 4 beautiful daughters and we thank the Lord for them. My grandson lost his 2nd son in 2011 from sids. The Lord blessed him with a healthy boy and girl since then.